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AHRQ Diagnosis and Treatment of ME/CFS: addendum, 2016, Smith et al

Discussion in 'ME/CFS research' started by Sly Saint, Jun 5, 2021.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    "This publication is provided for historical reference only and the information may be out of date."

    The AHRQ evidence report on the Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome was published in December, 2014 and provided a literature review for the National Institutes of Health Pathways to Prevention Workshop on Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.1, 2

    The review found eight case definitions for either chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME), or ME/CFS, and since its publication, an additional case definition was published by the Institute of Medicine along with the recommendation of a new name, Systemic Exertional Intolerance Disease.3

    The Oxford (Sharpe, 1991) case definition is the least specific of the definitions and less generalizable to the broader population of patients with ME/CFS. It could identify individuals who have had 6 months of unexplained fatigue with physical and mental impairment, but no other specific features of ME/CFS such as post-exertional malaise which is considered by many to be a hallmark symptom of the disease.3
    As a result, using the Oxford case definition results in a high risk of including patients who may have an alternate fatiguing illness or whose illness resolves spontaneously with time. In light of this, we recommended in our report that future intervention studies use a single agreed upon case definition, other than the Oxford (Sharpe, 1991) case definition. If a single definition could not be agreed upon, future research should retire the use of the Oxford (Sharpe, 1991) case definition.

    The National Institute of Health (NIH) panel assembled to review evidence presented at the NIH Pathways to Prevention Workshop agreed with our recommendation, stating that the continued use of the Oxford (Sharpe, 1991) case definition “may impair progress and cause harm.”2 In light of this, we have received public comment requesting a separation of results based on case definition to appraise the impact of Oxford based trials on conclusions of the report. Additionally, the public has requested that we separate cognitive behavioral therapy (CBT) from other counseling and behavioral interventions given that CBT is a specific therapeutic approach.

    The purpose of this addendum to our original report is to assess the impact of studies using the Oxford (Sharpe, 1991) case definition on conclusions and to assess the impact of separating studies of cognitive behavioral therapy from other counseling and behavioral interventions.

    Last edited by a moderator: Jun 5, 2021
  2. HMB

    HMB Established Member

    I just noticed this today. AHRQ have archived this. Quietly, it seems. Cannot find an explanation nor a date when the material was archived.

    See https://archive.ahrq.gov/research/findings/evidence-based-reports/er219-abstract.html

    This webpage lists the executive summary; evidence report; and July 2016 update (addendum to report).

    You are directed to www.ahrq.gov for current information. Which reveals nothing as it's the home page.

    Insertion of ‘myalgic encephalomyelitis’ or 'Chronic fatigue syndrome' in search box yields the archived reports.

    Except for one current item, AHRQ page for patients ’next steps after your diagnosis’, from 2020.

    Can anyone shed any light on this?
  3. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Michelle likes this.
  4. Medfeb

    Medfeb Senior Member (Voting Rights)


    The ME/CFS evidence review is still available on the main AHRQ site for evidence reviews where its marked as archived with the note that "the report is greater than 3 years old. Findings may be used for research purposes, but should not be considered current."

    I didn't realize that AHRQ had a separate archive site as well

    The Wayback Machine has the archive page you posted going back to June 2018 and the page on the main AHRQ site going back to September 2019 so it appears that both have been like this for a while.
  5. Denise

    Denise Senior Member (Voting Rights)

    (Sorry to be late in seeing this but I see MedFeb has answered.)
    Snowdrop likes this.

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